Headline: 2018 Louis Waller Lecture looks back on the early days of donor conception in Victoria

More than 160 people attended the 2018 Louis Waller Lecture, ‘Looking back: the early days of donor conception in Victoria’, making it VARTA’s largest Louis Waller Lecture to date.

The evening, launched by the Victorian Minister for Health the Hon Jill Hennessy MP by video, and compèred by VARTA Chairperson Kirsten Mander, was particularly special because the keynote speech was delivered by Emeritus Professor Waller himself.

Dinah and Ben's IVF treatment lasted four years until Dinah finally gave birth to their daughter Tallulah in 2010. In listening to this podcast series please bear in mind that Dinah and Ben's experience is not universal, it is their story. This podcast series is not intended to replace or replicate medical advice.

Transcript

This is a podcast from the Victorian Assisted Reproductive Treatment Authority or VARTA. In this podcast Dinah and Ben share their experience of undertaking IVF. Dinah and Ben’s IVF journey lasted four years until Dinah finally gave birth to their daughter Tallulah in 2010. In listening to this podcast please bear in mind that Dinah and Ben’s experience is not universal, it is their story. This podcast is not intended to replace or replicate medical advice. In this chapter Dinah talks about the beginning of the IVF journey.

Dinah:

My husband and I started trying for a baby in July 2005 and I just felt straightaway that something was wrong. I felt like my cycle was sort of unreliable and I didn’t really know when I was ovulating and I also had the expectation that many people have I guess and that is a reality for many people that they fall pregnant the first time that they have unprotected sex and we’d been doing what most couples do which is use contraception for how many years we’d been together and then suddenly throw away the contraception and just expect it to happen straightaway and that wasn’t the case for us and the more we sort of went on and we kept trying naturally I just felt that something was wrong.

So I investigated and made the appointment to see a specialist and that’s sort of the beginning of our journey I guess. We only lasted six months because I couldn’t last any longer so we tried for six months. You know other people had sort of said you know “maybe try for a year and see how you go” and that wasn’t what I wanted to do and I felt like I was getting older and I felt like everyone around me was getting pregnant and I wasn’t and I really wanted to act on that and you know I’m glad that we did because the process of actually being involved in IVF takes a lot longer than sort of what you’d expect from the outset as well I think.

So you know from when we started in July 2005 to when we actually conceived in April 2009 that’s a long time and you know I would have expected it would have been quicker than that. So we started trying when both of us were 32. I think it’s different for everybody and whenever I talk about my IVF journey I always preface it by saying that everybody’s journey is different and this is just – you know, I can only talk about my own journey and I mean I know plenty of people who have been involved in IVF. I guess through the IVF process I’ve met people and it seems to me when you open up about IVF you find that there are a lot more people involved than perhaps what you thought.

So I have talked to other people but this is my journey and this is my story and for me six months was the maximum amount of time that I could allow it to go by without any intervention and my specialist supported that. It was a whole new world to me and the very first question that we were asked when we went into the specialist’s rooms was – we sat down and did the normal pleasantries, introduced ourselves and the first question he asked was “does the penis go into the vagina and sperm come out” and both Ben and I went “yes”, I think so and we sort of reflected on it later, like it was such a confronting, embarrassing question to be talking about so early in the piece and I think for me and for my husband that sums up the whole journey, like it is a very confronting, personal thing and you are revealing intimate personal details about yourself and about your relationship and about your life and your physical body as well and everybody knows everything. All the specialists and the nurses and everyone, the team that you are working with, the medical team, know everything about you in that intimate way and it’s quite confronting.

Did you know anyone else who had been through IVF?

Yes I did. I have a very close friend, friends who are twins and one of the twins has four children and the other one has none and had started IVF before I did. So I knew a bit about the process from her but I really don’t think you know much about IVF until you actually start it yourself but it is helpful to hear other people’s stories and to hear what they’ve been through and you know, when she started going through IVF I was very much of the opinion that that was never going to happen to me. I didn’t know anything about the physical process apart from the fact that she tended to be – when we would meet and talk, if we would talk about anything to do with having children or pregnancy she would get quite upset. So I didn’t know much about the physical process of what she was going through but I definitely knew that it was emotionally affecting her. Throughout the process of IVF we had five stimulated cycles. We produced 12 embryos that were viable for transfer and we had nine transfers and in 2009 I finally conceived my daughter who is now two years old so she was born in January 2010 and conceiving her and carrying her and birthing her and having her is the best thing that’s ever happened to me.

I have a very large, supportive family and I did talk to my family, they all knew about the process that I was going through and I felt very comfortable being able to express how I was feeling along the way with my family and I think from talking to other people along the way I think that’s possibly, you know, that’s a very lucky position to be in because I know that I’ve spoken to some women who don’t feel comfortable sharing it with even their family and particularly with their in-law’s family but in my case I felt that it was important that everybody knew where we were at. Having said that I definitely didn’t extend it outside the family and I didn’t want anybody to know who I wasn’t in control of telling myself. So very close friends knew what was happening. No one at work knew what was happening.

I found work an extremely stressful environment because I felt like if I revealed the fact that I was trying to conceive then somehow that would affect my career development and I didn’t want that to be the case but further along in the journey I actually found that telling a few select people at work was actually really helpful and I actually felt like a huge burden had been lifted off my shoulders because I actually shared where I was at emotionally and you know, I mean the way that IVF works, it’s a cliché to say that it’s a rollercoaster but it is a rollercoaster.

You are on an absolute high when you have produced embryos that are viable and they are implanted and you have the positive belief that perhaps that could become a pregnancy and then in my case when it actually does become a pregnancy you know it’s just an amazingly euphoric and positive place to be and then you have the other side of it when it doesn’t become a pregnancy or when it becomes a pregnancy and that pregnancy is not viable which also happened to me and the sense of loss and the sense of disappointment or if you have a stimulated cycle that doesn’t produce any viable embryos the disappointment is so great and so personal and so inappropriate I guess in a way to be sharing at work but affects every inch of your being and of course you bring it to the workplace as much as you try so hard and so stoically, you know like I did, to prevent it impacting in the work environment. Of course it’s going to and even the hormones that you are taking can make you feel hormonal and you know, I liken it to being in a constant state of PMS and that can impact. For me it definitely did impact on my work and I actually work with children as well, children and families so that sort of was another I guess you know aspect of how difficult it was and when I finally did open up to people at work or select people at work, I just found that I really gained some support and some understanding, particularly from the women. I mean I did only tell women that were in my workplace and some real sensitivity about how I might be feeling and some real support and some care.

We produced 12 embryos that were viable for transfer and I had nine cycles to conceive my daughter and then afterwards, after she was born we did another cycle, a final cycle, so that’s 10 transfers altogether and five stimulated cycles. So some cycles produce more embryos than just the one that’s implanted that are viable so they freeze them and then you can go back and do what they call a frozen embryo transfer which is a lot less invasive in terms that you don’t actually have to go through the stimulation process. So those transfers in inverted commas are a little bit easier than perhaps the stimulated ones can be. So I believe that the process depends on individual specialists and individual circumstances and you know, various variables like that and I think that things have probably changed a little bit perhaps since I went through my cycles but for me, a stimulated cycle involved taking the pill for two weeks or thereabouts and that was the irony of the whole situation, or one of the many ironies I guess is that you are trying to conceive and you’ve thrown away the pill and then they say “here’s the pill, take the pill” and you just think ‘that’s insane’ but that’s what they call the down regulation phase of the cycle if that’s the particular cycle that you are doing and so I took the pill for x amount of days and then I took a nasal spray which was spraying like the same type of thing that you do when you’ve got a cold or when you’ve got a sinus infection into your nose twice a day at a set time and basically my sort of layperson’s understanding of it is that inhibits all the hormones that produce ovulation. So it sort of controls the cycle to sort of put you in a semi-menopausal type state I guess where you are not actually ovulating and that in itself I found to be extremely symptomatic.

I was extremely symptomatic during that phase because of the way that the hormones affected your own natural balance of hormones. So I found myself to be quite teary, quite angry, quite easily irritated. I’m sure my husband will attest to that and yes, there is so much that you can blame on the hormones during that phase and then what happens once they’ve got to a point where your cycle is under control, then they give you an injection that you administer yourself and it’s in like a pen type format and you inject it into your stomach once a day at a certain time and with a certain dosage and that I actually found to have the least impact I guess on me emotionally and it’s funny because when you go along to the seminar at the start you know, they bring out the injection pen and all the women go - and the men go “oh God, I’m going to have to do that, it’s just going to be horrible” and the first cycle yeah, my husband did every injection for me because I just couldn’t face doing it myself and the second cycle he actually was away for a couple of nights for work and so I had to do it myself and then after that I was like “I’ve got this, I’m fine, I’m all over it”. The injections, no problem and I could do it you know watching TV and just sitting there, yeah, it’s seven o’clock, right, bang, okay done. You know it just becomes such an easy part of the process and I guess for me I felt like that was the positive part of the process. Like the down regulation was the difficult part and then when I started injecting the hormone to build up the follicles to grow the eggs at least I felt like I was doing something positive towards producing an embryo.

So I think emotionally that helped me to sort of get through that injection process and then you get to a point where you do some scans and blood tests and things and they check how many follicles you have and how mature they are. Then you go through a procedure, we called it an egg harvest which I guess is a pretty layperson’s term for it but they essentially extract the eggs from the follicles and that’s done under a light general anaesthetic. In terms of physical recovery from that, I actually found that quite tricky but I know I’ve spoken to women who haven’t had a problem with it and haven’t had any sort of side effects from it. I found it quite tricky because I tended to react. My follicles were very – there were lots of them and they were very large so I sort of felt like I had bloating in my lower stomach before I go in for the procedure and then after the procedure I feel like it was still sort of, you know, bloated I guess is the best way to sort of describe it and I know I had to buy some sort of baggy cardigans to cover up what I felt was this bloated stomach at the time which you know is another irony of the whole situation because what you want to be doing is buying cardigans to cover your pregnancy rather than covering the fact that you are trying to get pregnant.

In our first cycle because we didn’t have any problems with my husband’s sperm, the problem lay in the fact that I had very tortuous tubes and that so that it was described to me that you know, when I do ovulate it’s very difficult for the sperm and the egg to meet up. So I guess what they do is they take the eggs out and they bypass that whole process of coming down the fallopian tubes and meeting sperm so they pop the sperm and the eggs in a dish together and let them sort it out is the way that I sort of look at it and that’s what we did the first time and that yielded lots of embryos for us.

We were very lucky the first time and I think we ended up with five viable embryos from that process, which doesn’t sound like much and it didn’t sound like much to us at the time but as we learnt throughout the journey that was actually pretty damn successful. The next time we did it we actually only ended up with one viable embryo and so then the third time we did the stimulated cycle it was suggested to us that we do a process called microinjection where they select the best looking sperm. I’m not exactly sure how they do that and they actually inject it into the egg so that they are guaranteed of some sort of fertilisation rate. They then chose the best looking one and I imagine they have quite detailed scientific criteria and they put the best looking one again I guess or the one that’s doing the right thing and you know doing what it should be doing if it was naturally occurring inside you or inside a woman’s uterus then they pick that one and so they pop that back in a very simple, easy procedure that’s pretty much like having a pap smear and it’s all pretty quick and easy and straightforward and you can hardly believe that it’s there and you know I mean the first thing that you think is if I go to the toilet afterwards am I going to pee it out by accident. What’s holding it in there? But I guess as I went through the process I got used to the fact that you know – I think the first time I did it I went home and lay on the couch with my legs up in the air for a good couple of hours just hoping that that would, you know, somehow make it stick and make sure that it wouldn’t fall out and walked around very carefully, you are careful not to jump or you know, not to run or do anything like that and then the second, third, fourth, fifth time I did it I went back to work so it was fine.

I actually think and I think Ben would say the same thing, that the whole process has made us closer and has made us realise that we are in this together and that we function quite well most of the time as a team and has really reinforced that fact that you know whatever life throws at us we can get through it because of what we’ve been through together to conceive our daughter. There is no doubt that it was trying at some points and particularly when I was taking hormones and Ben obviously wasn’t, the way that we would react to different scenarios was quite different. I found that I was much more likely – and I willingly admit this, I was much more likely to fly off the handle at small things that happened. I mean I found it to be a very depressing process and I found the fact that I couldn’t conceive, personally I took that as a failure on my part and the way that I reacted to that was to sort of spiral downwards in terms of feeling depressed and I remember one day we were hanging out the washing, Ben and I were hanging out the washing together and I had accidentally put something red in the washing and all my white socks and underwear were pink and I absolutely lost the plot. I completely lost it and screamed and yelled and cried and Ben was just sitting there starting at me going “okay, you realise that this is a complete overreaction to pink underwear don’t you” and it all came out.

I just remember that day so clearly because it all came out that day at how upset I was feeling and how difficult I was finding the process and that was when I actually went to see my psychologist and said to her I don’t think I’m coping with this whole process and she suggested that I think about antidepressants which I did and as much as when you are trying to conceive a baby you are trying to you know, do all the right things that they talk about naturally as well as throughout the medical process that you are going through, you know I mean I found I was avoiding caffeine and I was you know, trying to eat well and make sure that you know I had a balanced diet and I ate regularly and did exercise and all those kind of things because you know, that may have an impact or there is literature out there that says that you know, that may have an impact. So I was reading all that thinking okay, I’ve got to do the right thing. So the concept of taking a medication on top of what I was already taking was just not an option for me until that point and it was the washing day that you know Ben and I sort of really had a big discussion/argument about how I was coping and that made me realise that I actually wasn’t coping as well as I perhaps thought I was and that it was much more important to look after myself so that I was able to look after any future possible child than to worry about a child that wasn’t even conceived yet.

I did end up taking antidepressants and luckily for me they worked like a charm. So I suddenly felt like a veil had been lifted off me and I could cope and I could get out there because I shut down from socialising with people, anyone with children I wouldn’t see. I cut myself off from my friends. I cut myself off from my extended family. I just wouldn’t engage in any sort of interaction where I felt like there were going to be parents and children there which is everywhere. You know, my favourite thing to do is to shop and just to wander around the shops. I love to window shop and I wouldn’t even go to shopping centres anymore because I was so upset when I’d see a pregnant woman or I’d see a mother with a baby in a pram. You know I’d end up in tears at shopping centres so I just pulled away from that and the only thing I was really doing was working and just maintaining that. So it was quite a – I mean it’s difficult to talk about because it’s hard to reflect on that and to sort of acknowledge that that’s how bad it was. You know, in reality for me I just found the whole process so elongated and so different to what my expectations were for my life.

I’ve always wanted children. I’m a teacher. I love children and I’m passionate about their development and I felt like I was put on this earth to have my own children and the fact that I couldn’t do that was like – for me it was an overwhelming sense of failure. It was very challenging because I guess riding the rollercoaster of it, every time I had a transfer I would look at the children and families that I’m working with and think that’s going to be me soon. Soon that’s going to be me and you know I would do that and I would do that as a parent and that kind of thing and then as soon as I had a failure it would be the complete opposite and I’d look at them so longingly and just thinking they must be so happy and you know, look they’ve got children and their children are beautiful and look at the exciting way they greet each other at the end of the day and you know I want that so badly and I feel so underprivileged because I don’t have access to that and the fact that it seemed so easy, I think that’s one of the things that really killed me about the whole process was when you think about conception you think that it should be easy. It should be an easy process for women to conceive because that’s what we’ve been doing for centuries. That’s what we are born to do essentially and you know, your Mum has been telling you since you were 12 years old you know not to have unprotected sex with boys because you’ll get pregnant you know and the people that conceive the first time and things like that, it’s just such a frustrating thing to hear and a frustrating position of lack of control to be in as a woman to not be able to conceive when you want to conceive so badly.

I used a lot of techniques, I talked about it with friends and family a lot. I talked about it with my husband a lot and we put strategies in place that would help our sort of daily life be more exciting and particularly during what they call the two week wait which is the time between when they transfer the embryo and when you get your pregnancy test done and I also utilised a lot of forums on the internet and did, you know, a hundred thousand Google searches for you know, something that would reassure me that there were other women out there like me and experiencing the same anxiety and the same you know fluctuation of emotions and the same sadness. So I found that to be beneficial. I never really got involved in the forums in terms of posting anything myself but I definitely loved to trawl through them and you know, my husband would come in at 10 o’clock at night and say “what are you doing”, it’s like “nothing, just trawling through the information, you know, what people are saying on the internet about this cycle and you know Jess had her cycle last week and she said you know” – and I don’t even know these people, you know, they were going through the same thing and therefore I felt connected. The other thing that I did was I utilised the counsellors that were provided at the centre that I was at getting my treatment and I definitely made good use of them. You know, I would see them you know once a month or even sometimes once a week when I was going through a particularly traumatic experience like a miscarriage.

It’s hard to describe. It was unbelievable. I remember the moment. You know, I’d actually cheated because I’d actually done a home pregnancy test myself the day before my blood test and the morning of my blood test and you know, I resisted for so long and so many of my transfers I didn’t do that, I just waited for my blood test like a good girl, like a good patient and then with the final – the more I went into the cycles the less likely I was to be a good patient and I did a test and I remember looking at it in the bathroom just going oh my goodness, I cannot believe that there are two pink lines and I took a photo of it on my mobile phone and I texted it to my sister and I said “can you see two lines, can you see two pink lines here because I think I can see two pink lines but I don’t know if I’m making it up” and she rang me back straightaway and said “there are definitely two lines there. I can see two pink lines in the photo”. So you know, the excitement level in the house was pretty high from my point of view but of course my ever the calm, level headed husband said “you know, let’s just wait for the blood test and let’s not get too excited and we’ve been in this position before” and all that, trying to monitor my excitement levels.

So I had the blood test and I was driving in to a meeting and my nurse rang and I could tell immediately from the tone of her voice and you can imagine going through as many cycles as what I’d gone through with my nurse, I knew her quite well and she knew me very well as well and I could tell from the tone of her voice that it was going to be good news and so I pulled over and she told me and I just couldn’t stop crying. I couldn’t stop crying and I remember her saying” don’t cry, it’s good, it’s good news” and I said” I know, I know, it’s really good news, I’m so happy” and the blood test was the best blood test that I’d ever had in all three pregnancies that I’d had and two of them were unsuccessful. This was the best result and so I just cried even more because I was so like this really could be it. This really could be it and I remember sitting in the meeting staring at the woman who was presenting, just not listening to a word she said. I have no idea what that meeting was about.

So my pregnancy was probably the easiest and best and smoothest part of the whole experience. I was just so lucky and I felt like I was justified at getting a good pregnancy because I’d been through so much to get there. So I felt like I was you know, given this gift of here you go, have a good pregnancy because you had such a crap time beforehand. Having said that though, you know, it was very smooth and very straightforward and I absolutely loved it and I did all those things that you know, I always wanted to do. I took a photo of my belly every week and I got a cast made of my belly and you know I had you know a baby shower and all those things. I loved wearing fat clothes and you know, I loved being fat. I rubbed my belly the whole time. My Dad said to me one day “you are going to rub that baby away because you are rubbing it so much” but I didn’t care because I’d wanted to do it for so long. I just wanted to enjoy it. Having said that, you know the first 12 weeks were a really anxious time for both Ben and I and for our families as well. You know, my parents would ring me you know regularly saying, you know, “how are you” with that note of you know, please tell me you are okay, please tell me it’s all going well and every milestone that we would get to – so you know, we had an early scan to check that everything was okay so about six or seven weeks I think we had that scan done and that was okay and then the 12 week scan, the build up to that, I would get quite anxious and then you know there’d be this huge sense of relief when that was positive and successful as well. Each scan was a huge milestone and it definitely came with a sense of anxiety beforehand about you know, what if, what if, what if but you know – I don’t know, there was something about this experience that was different. We’d never sort of been – we’d never had a 12 week scan before and we’d never had a 20 week scan before and you know, everything – every time we got to a particular milestone it was like we’ve never been here before so that must be positive and so we just sort of enjoyed it as much as we could I guess and yeah, the whole planning process – I mean I remember you know looking up name websites, you know, websites with baby names and just spending hours and hours and hours doing that and it was just such a positive, exciting time and a special time in our lives and also the lives of our families as well. Particularly my Dad was quite emotional you know when I started to show and you know, every time I saw him he would be you know, quite sort of teary and emotional that I was growing and that I was looking so good and he spent a lot of time telling me how good I look and how beautiful I look and I actually got stopped in the street twice by women saying “you look amazing, you look like you are absolutely glowing” and I think it was just pure relief that it was finally happening to me.

It was a pretty good time. Yeah, there was lots of – I think like what Dinah’s saying, it was sort of 50:50. It was really good and there was also a little bit of I don’t want to celebrate this too hard, just in case things don’t work out and then every time you’d have a scan you’d just let yourself celebrate thing a little bit more and you know as the pregnancy progressed and you know – and then after a while that kind of faded away didn’t it, we got to a point where we were pretty confident we were actually going to have a baby. It was about two days before. It didn’t take that long but at some point in the pregnancy it definitely ticked over from you know, let’s keep a lid on it kind of you know to use a football term, you know, one week at a time sort of feeling for a little while and then there came a point where you know, it was a clear realisation that you know, this was actually going to happen and then I think we started to really relax into it and we really enjoyed it so I mean obviously a huge change from what we’d been through for the previous you know five or so years.

We talked about this you know many times, the time it took and those things and I think once the baby’s born the IVF stuff sort of disappears pretty quickly.

You definitely don’t think about it in the everyday life of bringing up the child but when someone asks you a question and you just scrape the surface, like for Ben and I both during this interview you know, getting upset to the point of tears it’s very much still there. You very much carry it with you and you know we’ve also talked about it, as much as I agree with what you are saying, you know you’ve got the child and you know, they are running around screaming, you think ‘oh my goodness, it’s such hard work being a parent’ but by the same token you know, I often find reflecting on my daily life with my child I remind myself to be very grateful and I don’t know if other parents who’ve conceived you know really quickly and conceive lots of children feel that. I will never know because that wasn’t my story but I definitely temper my own behaviour with her by reminding myself how lucky I am that she’s in our lives. I think for me it all comes down to expectations and I expected that my journey would end when I had the baby and in fact it actually starts and I remember the specialist saying that to us very, very early on is you know, “you won’t relax until you get that baby in your arms and then your journey begins” and it’s kind of true. We thought that once the baby was born we would be able to count all its fingers and toes and see that it you know cried and fed and things like that and relax and go okay, we’ve got a perfectly normal baby, thank goodness, you know, let’s get on with our happily ever after. In reality, that wasn’t the case for us. We had a very unsettled baby, it was a very little baby and she didn’t feed that well. She fed well in the end but you know, it was a long time before she actually learnt to feed in big doses so she could actually sleep well. She didn’t sleep very well at night at all. In the first eight weeks she would hardly sleep at night so we were sort of you know, getting you know, one hour at a time shifts of sleep and you know, that’s a very different experience to some other people who’ve had babies. You know, I know my brother’s just had a baby and I think it’s eight weeks old and it wakes once a night, I mean brilliant, perfect but that wasn’t our experience at all and we ended up – at three months we ended up in sleep school and I suffered from postnatal anxiety because I was so anxious to protect and I think Ben did to some extent as well, to protect and to look after and to nourish this precious thing that we had spent so long creating who didn’t seem to be – she was very little so she didn’t seem to be sort of thriving I guess as they say. It was great for us but I think that the gap between my expectations and Ben’s expectations as well of being able to look after this child and I guess with my background in terms of working with children I just had all this confidence that it would just be so easy for me and I had no concept of what the reality would actually be and the guilt that’s associated with that in that you know I took so long to conceive this child, how come I sometimes want to throw her out the window. You know, there must be something wrong with me. So it was tumultuous to say the least but she’s perfect so we are lucky.

Is there anything that you wanted to add to that Ben?

Ben:

Again I reckon it probably comes down to the male thing of you know, I mean in a weird way, getting pregnant, you know, I didn’t have much to do with that but all I could do was support Dinah in that and then I think you know a really little baby, from a male perspective you know, you don’t have much to do with that either but you can just support your partner in that and so I think in a way it’s good, it all kicks into that male instinct of seeing what you can do to fix the problem and that might be, you know, taking the baby out for three hour walks while you know, Mum has a sleep or whatever. You know, whatever. So while you know it was difficult and stressful at least there was more practical things that you could do as opposed to the getting pregnant time where there was not that much that you could practically do to help. So it was difficult and you know, you are balancing work and not sleeping and driving to work and sleeping at the same time and you know, you are balancing all of those complex life things but I suppose you know, everyone that’s had a child is in that boat. So I found it difficult and stressful but in some ways you know a lot easier than the other part of the journey and I mean obviously she’s two and a half now but it’s still difficult and stressful and you know but in different ways than it was when she was two and a half weeks obviously.

I think you know, with your kind of work colleagues and things like that I tended to keep it pretty private and I guess that was a vague decision that we made at some point but I don’t know that we really discussed you know who we were going to tell exactly and who we weren’t but there was enough family who knew what was going on that that was probably enough and you know, we kept it pretty private but I don’t know if we did it again, you know, I don’t know if I would do it the same. I probably would but that’s just the conservative in me I think but I don’t know. As far as sort of having that, I mean Dinah was doing the counselling sort of stuff which we probably mentioned already but yeah I think a sort of typical male perspective on that of you know, well, you know you just sort of tough it out and you know it will come good in the end anyway so you know, it’s just a waiting game, we’ll get there. I think that was a big part of my thinking. For me the whole way through I said to Dinah “it will happen” and you know from my understanding of the science which is pretty limited let’s face it but you know, I’ll pretend I knew what I was talking about, my understanding from talking to the specialist and so forth was that it was a numbers game. So if you kept doing it for long enough, or the longer you did it your chances of getting pregnant and staying pregnant were good. Not necessarily good but that was the way to get there. So giving up wasn’t – you know, I mean while tempting and would have been a road that we could have taken a hundred different times, that kind of voice in the back of my head constantly said keep trying and we’ll get there, just keep going, keep going, keep going and I think in hindsight you know if we’d know that there was a date or a time that it was going to happen, that it was going to take five years but at some point it would happen it would have been so much easier and I know that’s not going to happen for everyone, I know that you know we were lucky in the end but trusting that voice that was saying keep going, keep going, turned out to be the right thing to do. So if we were to live it over again, I would have still said keep going, keep going, keep going but it would have been nice to know that that was true. That would have been a lot easier.

I think it’s really hard to give advice because you can only really say from your own point of view, like what helped you or what worked for you and everybody is going to come at it differently. I mean I know you know, a very good friend of my sisters went through IVF after I had started so I’d done a couple of cycles unsuccessfully and she started and did her first cycle and got pregnant straightaway and had a child and I found that extremely difficult to cope with because that wasn’t anywhere near my experience whereas in a way I think that is the ultimate IVF experience. You know, you get to the point where you have to utilise IVF services, you go through IVF, you conceive straightaway and you have a child from that conception. I mean that’s what we all want and that’s what we all – well I think, we definitely expected that that would be our story as well and for me in particular and I guess for Ben as well, when that’s not your story it becomes very difficult to manage your expectations around that so I guess my advice if there is such advice is to you know, go with your gut feeling and go and get assistance as soon as you feel that there is something wrong instead of waiting for a magical six month mark or 12 month mark or whatever of not being able to conceive and you know, just embrace the whole process because – instead of just sort of trying to fight it. I think my whole experience I was fighting it going this is not the way it’s meant to be and this was not meant to happen for me and when I didn’t conceive first times it’s you know, I’m meant to conceive first time and that’s how it’s meant to happen and I guess if I was to go back and do it again I think much more like Ben’s sort of saying, is that you know hopefully we’ll get there in the end so just use a bit more of a Buddhist sort of attitude and just accept that this is where you are and what you are doing and this is all part of it and hopefully it will grow you a beautiful baby and it doesn’t actually matter in the end where they come from because they all behave exactly the same and they all do exactly the same things and they all bring you just as much joy as if you had conceived naturally so in the end it doesn’t actually matter.

We had one frozen embryo and we took a long time to come to a decision to transfer that and to implant that and we finally did commit to doing that. I think that the reservation for me was just the emotion of it in that if it worked that would be fantastic but also you know a whole new world.

The last shot

The last chance and you know, do I really want to have that journey completely over because we had talked about it a lot and our decision was not to do IVF again, that we’d done it enough to get one child and that we were lucky enough to sort of have one child, a perfectly healthy child so why push our luck sort of thing. So we finally decided to do that last frozen embryo and I think there was a lot more grief there for me than what I had expected and I think only now really am I processing you know that this is – when did we do that? A year and a half ago. A year ago. I think only now I’m processing the repercussions of that and the results of that I guess in that you know, natural conception is not a possibility for us so having another child is not a possibility for us because we have decided not to do IVF again which I think is the right decision for us to make but it’s still – you know, there’s still a grieving process for what you imagined your family would look like and I always imagined my family would look, you know, big, like my family and that’s not going to be the case. So there’s a whole other process of grief and coming to the understanding that you know, that that’s not going to be the case and that’s also complex and laden with guilt because you feel guilty for feeling bad that you can’t have a second child you know, for feeling sad that you can’t have a second child whereas you know you feel like you should be feeling so grateful for that one child and you do, you do feel so grateful for that one child and I look at you know, friends of mine who have done IVF and haven’t conceived at all and how glad I am not to be in that position but there is that element of I really wanted to have more than one child and I always envisaged my family being bigger than having just one child and that’s not going to be reality for us.

I think we are still talking about that. You know, there is a whole other world that we didn’t have to talk about which was you know, what would we do if we had more frozen embryos and I think I’m sort of glad that we haven’t had to have that conversation but the vague conversation we’ve had, we’ve been in disagreement about that to some degree so you know that would have been tough as well so you know, whether you donate them or do whatever with them. So I think we are kind of in a way lucky that we haven’t had to have those conversations and you know sometimes I guess both of us wonder about the choice not to do IVF anymore and again I agree with Dinah, it’s the right choice for us but you know.

It does cross your mind

Yeah, it’s a definite, you know, if we want to have more children, that’s the road we are going to have to go down so to say well we are not going to have any more children and that’s a sad things, there is still an option there so you’ve either got to accept that it’s a sad thing, we are not going to have any more children or we go down that road you know. So we are kind of in a weird, you know – with a two and a half year old, we are in a weird sort of stage where we’ve really still got to come to terms with you know, where we are at now which in a way you know kind of stretches our IVF journey out to seven and a half years now or more which is a really long time to have that as part of your life so I suppose it will sort of to some degree be there for longer than that.

I have always known that my husband was a sperm donor while at university in the 70s.

It was undertaken on a strictly confidential basis and over the years we really did not give it much of a thought.

All this changed when my husband saw an advertisement in a National newspaper announcing that sperm donor children now had the right to find out who their biological fathers were and asked for people to come forward if they felt they wanted to assist in this process.

For people seeking to create a family using donor eggs or sperm, it is important to understand the laws governing the process; and in particular, to know that, in Australia, donations can only be made on an altruistic basis – in other words, donors cannot be paid for use of their eggs or sperm.

Following Channel Nine’s 60 Minutes investigation Baby Business, broadcast on Sunday 18 September, it appears that confusion exists about this issue and the way in which the law defines payment.

Dinah and Ben's IVF treatment lasted four years until Dinah finally gave birth to their daughter Tallulah in 2010. In listening to this podcast series please bear in mind that Dinah and Ben's experience is not universal, it is their story. This podcast series is not intended to replace or replicate medical advice.

Transcript

A male perspective on IVF treatment

Look, it was really hard. I think from the male perspective and men will always think this way and talk this way but you know, you want to fix things and your role in the family is as the doer you know, you kind of get things done and it’s your family’s wellbeing and welfare that’s at the heart of you know your kind of purpose and this wasn’t – I haven’t talked about this for a while. I guess it’s just something that you couldn’t fix you know and all you can do is support and even then I suppose you find the things you can fix. You know, trying to make Dinah feel better about certain things. There were crap things and it wasn’t really…

I think Ben’s nature is to be a very positive person and that’s definitely the role he plays in our relationship and my nature is to see not the negative but to sort of come from a more pessimistic viewpoint to start with and then be surprised and be excited whereas Ben – and I think Ben sort of struggled to find the positive in what we were going through and so we did implement – like I said before, we did implement strategies to try and manage that emotion and that anxiety and one of them, I remember the first couple of cycles I went through, during the two week wait I said to Ben you know, “let’s do something every night”. Let’s give each other a surprise or a lolly or you know, go for a walk and do something unusual that we don’t usually do to make sure that there is something to look forward to every night when we come home. That lasted one cycle maybe or two cycles but you know we often talked about implementing strategies to make ourselves feel more positive and more exciting and have things to look forward to. So we went overseas during the whole process. I think about three years in we decided to do a trip to Vietnam together and you know that was just something so positive in our lives to look forward to that we wouldn’t be able to do if we had a child or we wouldn’t have chosen to do if we had a child or were pregnant. I mean it’s little compensation but at least it’s somet

The journey through IVF treatment brings many emotions to the surface. Couples who undertake the journey are often taken by surprise by the demands that IVF can make. Success and failure are always possibilities. In this program we hear about Alister's disappointment that is not often talked about but can be a very real part of the IVF journey. In listening to this podcast series please bear in mind that Alister's experience is not universal, it is his story. This podcast is not intended to replace or replicate medical advice.

Transcript

Stopping IVF treatment: a future without children (a man's perspective)

Hi, I’m Alistair; I’m not from Britain although I sound like it. I work mainly as a software engineer, although I do different things

Describe my IVF treatment... it was quite a long time ago and I’ve mainly blocked it out as a horrible experience.

My memory of it is that we did about five stimulated cycles which were...

It was a hard journey for me, obviously a very hard journey for both of us.

Men don’t talk about this stuff unless it’s some sort of professional, kind of counselling type of role. In my experience men aren’t very good at this sort of thing. Most men have no interest in discussing it. And if they do it’s all technical. And also I wasn’t aware of being emotionally particularly fraught. I guess I was, I must have been.

It’s a very different journey for the man compared to the woman I think. I think it was hard for me to acknowledge what I was going through in a way. When you’re the male half of the IVF unit you’re in a very feminine world. You’re very much, you feel like a spare part. You role is very limited just a blue room or a lounge as I like to call it. And really driving and making cups of tea so I did a lot of driving and made a lot of cups of tea. And listened patiently a great deal and tried to be supportive, that’s your role as the husband really.

As a result it was... It’s not as painful for the man. You’re less attuned to your desire for a child. I think I was less attuned to my desire for a child although it’s alway been a thing for me. It was such a big deal at the time and now I can barely remember much about it.

I think the most challenging thing for me about IVF was the lack of control. It was nice to be in an environment of highly skilled specialists doing their best and the whole of the medical apparatus. But knowing that it’s a numbers game and there’s not much you can do to help, the die has really been cast. I think that was the hardest thing, to not have any control and not be able to fix it. And we’re kind of A-type personalities, achieving people. Normally things in my life, if they go wrong I just work harder and things come right. So it was very difficult to be in a situation where it almost wasn’t up to me. It was in the lap of the gods. (3:19)

It’s difficult I think and I think it’s difficult for men. And also dealing with Anne’s emotions was quite hard although she was less stressed than she had been beforehand. But still a lot of anxiety around it. A lot of uncertainty. Not being able to plan became increasingly difficult. Can’t plan a holiday because we might get pregnant. You can’t change jobs because you might be pregnant. You can’t move house because you might be pregnant, etc, etc...

It’s putting your life on hold for years on end. We met people who put their life on hold for years and years and years and I always thought that was a cautionary tale from my perspective.

I think to be honest I tried not to think about it. There wasn’t anything you could do. The die was even more cast. There was just the wait and try to think about other things. There was no sense worrying about it. And to bring it up was just a huge can of worms. So I just tried to pay it as little mind as possible given the situation.

So at the end of the two weeks when the test was negative and Anne’s cycle came due. It was pretty hard. I’m not that comfortable around massive amounts of female emotion. It was difficult.

But you did have a role though. I knew what I was doing or what I needed to do. It wasn’t unclear. So in a way it was always better to have something particular to do rather than hanging around waiting for news one way or another.

I think we reacted in very gender stereotypical ways. Anne was very emotional, less emotional as she’d been for the preceding period. But she was still very emotional from our perspective. I was rather less so, I was deep into denial which is quite useful when you’re dealing with hard things. I could ignore it quite a lot.

In a funny way I think it was very good for our relationship. I think it had a common enemy and a common project. It felt very much...us against the world. Which I think was.... a good thing.

You know, it helped us as a couple.

I think we reacted in very gender stereotypical ways. Anne was very emotional, less emotional as she’d been for the preceding period. But she was still very emotional from our perspective. I was rather less so, I was deep into denial which is quite useful when you’re dealing with hard things. I could ignore it quite a lot.

In a funny way I think it was very good for our relationship. I think it had a common enemy and a common project. It felt very much...us against the world. Which I think was.... a good thing.

You know, it helped us as a couple.

And the difference in our reaction... we talked with a lot of people over the years about this now and our reactions were very typical. Mine was to try to move on a lot and not think about it too much and just get on past the next cycle, and what you need to do. Come on - she’ll be right, positive attitude. Chin up!

Whereas Anne was much more able to experience the emotion for what it was. It was much later that I had the space in my own sort of life to truly acknowledge what I was feeling. Once the clearly defined I get husband role was over I had space to realise I had to deal with my own grief.

It was only then that I realised I had grief to deal with. Knowing in theory I probably was upset. It was only two or three years after we had finished that I got in touch with it.

We dealt with the “talking too much issue” by a very strict rule we had called the “11 o’clock Rule”. The “11 o’clock Rule” is a wonderful thing, it is the rule where no-one talks about anything emotional or complicated after 11 o’clock at night. And it sounds a bit strict and arbitrary and stupid but it’s really helpful from the male perspective because otherwise those conversations can drift on all night long. It was annoying that there was a limit to it - a time limit - made it easier for me to actually engage with it and knowing that I was going to be allowed to escape at some point in the near future.

I think that was the single most useful thing we did. And calling it a rule, some arbitrary third party thing. It wasn’t really my fault. It wasn’t me being a prick. This is just a rule, I’m sorry it’s not my fault being a rule it’s nothing I can do about it. And that strangely helped a lot. And that’s probably the most important thing.

And also pretty considerate about respecting my limitations around how much I’m prepared to have dealings within any given 24 hour period.

From a male perspective to try to get some agreed boundaries on conversations about IVF and about how people feel. To encourage your partner to get some third party support like a counsellor, if they seem to need to talk more than you can listen.

I think take care of yourself. Don’t go to baptisms, don’t go to hospitals. Don’t go to one year old birthday parties. Don’t feel you’re being rude to people. And even if you are rude to people they are going to have to cope because this is horrible. Try to do nice things to yourself which is easier said than done.

Go out to dinner or see a movie which isn’t.... or go for a weekend away. Or something that isn’t focussed on IVF. Because it takes up your whole life. So anything that makes it not present to you. Anything which distracts you, that also doesn’t get in your way that you can’t go overseas for extended bit of time, for instance that you might miss a cycle... heaven forbid.

Smallish things. It’s more a question I think of doing nice things, it’s good but much more importantly don’t do the things which are going to hurt.

I didn’t get any support. And I don’t think I really needed it at the time, I wasn’t really particularly upset. We were involved in the art group the support group, which was quite good, quite good to have a peer group. We had all these social events and all the men would not talk about it because there’s nothing to talk about. There’s only one thing you do and you don’t really discuss that. And otherwise you’re just there in this women’s world holding the hand of your partner.

I guess it was nice having the company of people who understood what it was like and it was also nice having people who weren’t going to say, “why don’t you just adopt” or whatever and you could just swap war stories and I think that was the only thing... that was available. Better than counselling for me.

Everyone had stories of people’s awful reactions and useless failures to even attempt to behave considerately. And to be able to swap stories with each other about, to develop the sort of black sense of humour you need to cope with it. And to sort of vie for the person with the most awful response from a friend, sort of thing.

It sounds very negative. It’s such a hard experience. The only way through it is through a deeply black sense of humour. And, I think, that was good to have people too. And jokes which don’t make any sense outside the context and.... sounds horrible to outsiders and because you’re all engaged in the same struggle together and engaged in the same experience. You all had similar stories and similar experiences and similar...annoyances.

It was good to have people who... it was good to talk about it with. And wouldn’t feel judged or angry or upset or guilty.

My work was fairly... I’m a pretty open sort of person so I told my manager. I work in a very team-based environment so I was happy to tell people more than they wanted to know. And then I just told them I had to take time off. I didn’t really ask their permission I just said this is what I needed to do. And they were all fine with it.

It was nice to have a space where I wasn’t wearing my IVF hat. It was nice to have a place where... it’s more comfortable and familiar, achievement-based, success-oriented controllable sort of sphere.

It didn’t really affect my performance. I didn’t get fired. It didn’t affect my performance I don’t think. There was people in the team who had, the parents of very young children. I think their performance was very much affected by the whole being kept up at night by the screaming six month old baby.

Apart from the fact that you have to take a certain amount of time off to not be at things. But... it made work more fun. Not fun. Better because it was a place where you weren’t doing IVF. Somewhere normal and sane and no-one’s crying. Or not usually anyway. A nice calm safe space.

I wasn’t expecting much emotionally from people.

I think the thing I found most annoying with people, firstly people who got pregnant when we were trying. People who didn’t need to tell Anne. I could have strangled them... could have spent days waiting for the right moment to be the bearer of bad news and then it’s my problem. And I’m not the one who’s pregnant. Why is it my job to tell Anne. Let them do it. That’s my first thought - take responsibility for doing it themselves.

I think a lot of people were so traumatised by the whole thing on our behalf that they couldn’t handle it. It was just too much and so they blurted out at the appropriate moment so they’d tell us in groups to avoid the reaction.

The best reaction I had was someone who feigned to be completely callous. Who asked a few interested questions and said yeah, it must be hard for you. And that was the best reaction. A straightforwardness about it. And not to say; why doesn’t he just adopt or what about donor egg or any one of more than a hundred and one half thought through solutions that people desperately want to come up with.

People have to be prepared... if they want to have any sort of relationship with someone doing IVF they have to be prepare to wear the cost of that. They’ve got to be... If you get pregnant or something on IVF. Or if you just want to have a conversation with someone on IVF especially woman, they’re upset. If you don’t... If you can’t cope with that then you’re not... there’s no relationship there.

If you just try to avoid any negative feelings... you have to yeah. The way to support people is to accept that they’re completely traumatised and upset and angry and to just bear with that. And not to rush to solutions.

Well I can’t be sure to have said to have made that decision really. It’s a very women’s world, the men have a supporting role and I think that’s true of finishing treatment as much as being in treatment.

For me I guess having said that, there was a bit of a trigger which was when we looked for a second opinion about the treatment and the doctor started talking about donor sperm and donor eggs and surrogates. And I thought, this really isn’t for me. It turns out this is my boundary. It’s not everyone’s boundary.

It’s that... sense that it wasn’t going to work. I had a way of explaining to people which is hospitals only had one thing to treat for people’s legs. If there’s anything wrong with your legs they put it in a plaster cast. If the leg’s broken that’s good and it heals it. If it’s got a cut it’s no good at all. That was my experience of IVF, they could do one thing. And if your problem happened to be relevant to that one thing it would work. And if you had something that wasn’t touched by it then you may as well not bother. Whatever our problem is it wasn’t being affected by the things IVF could do. It seemed less and less likely to succeed.

So I was pretty ready to give it a rest when Anne suggested we weren’t going back, I was very relieved.

But I think for most couples... for us... not most couples the lead for that came from the female half.

Initially when we stopped it was wonderful. .....to the hospital and drink again. ...make plans ....two weeks ahead. We went to Vietnam for a month. It was great. It was really good to get away and to have our life back, it was fantastic.

And that went on for a while. But after about two years I went away for a weekend I was really upset.... and couldn’t figure out what I was so miserable about until I was driving back and thought to myself; I bet that’s got something to do with IVF I thought to myself.

That took about two or three years I think before I really had the space I think to be able to be upset. Because the first sort of.... initially finished ....such relief and then...and you’re still kind of helper, coper, strong crying shoulder kind of mode. And so it takes a while to wear off and by the time Anne was back standing on her own two feet again in tears on a weekly basis because it had got sort of calmer. It was only then that I could sort allow myself.... the space to acknowledge how upset I was.

There’s only enough room in a relationship for a certain amount of emotion. And for six or seven years Anne had all the emotion and of course she was more tearful than men there wasn’t space for me to have the emotion.

So.... when I did get counselling and try to find. Because of the uselessness of my old friendships about this sort of thing I think. Or at least my male friendships it wasn’t something I could discuss easily with people.

And it’s very hard..... to people... sort of failure, which it feels like. And it’s a kind of a death really. The death of your.... putative children you sacrifice so much for. Of a future you and it takes a while to even begin to realise that’s happened and longer to come to terms with.... grief around. I would talk about it like that. And that’s what it feels like.

It’s like losing an arm...something. A permanent state of affairs which you now need to adjust to. It takes a while for the reality to sink in.

I try not to think about what I miss about not being a father. It’s part of my coping mechanism is just to not think about it. So I know that’s not very helpful.

Since we finished IVF I have dropped.... part time in my engineering software kind of hat. And I’m studying. And as Anne has said we’re running a small faith community that takes up quite a lot of time.

For me it’s very important to... find some other role to nurturing in my life. To find some other way of being sort of.... low key dad for people. There’s lots of people who need that sort of masculine energy and support. And I guess I’ve just been locating them and doing that. It’s been kind of... how I can... play a positive kind of role in a pastoral sort of way.

And that’s help me a lot. We... I mean... As I said before, it’s more like losing an arm than other things because it’s a permanent loss. You’ll never be better. You never get to be just OK like you were before.

So you can become a deeper emotionally richer kind of person as a result of going through something like this. If you choose to. Some people seem to get very stuck. I’ve met people who’ve been ten, fifteen, twenty years grief stricken and never moved on. I think it’s possible to do so if you take concrete steps.

I think our life’s been very different because of the freedom of not having children has given us. It’s not freedom I’ve wanted but. Given... it’s good to make positive meaningful use of... so hence not working all that much.

And in our post IVF community we talk a lot about travel and people like sports cars and all that kind of things. And they’re all fine as well. But for me it’s been about finding some positive kind of generative way of spending my time so that I have that kind of part of me which wants to look after people gets expressed. And I’m not tied up... in my own self... so much.

Elizabeth, a parent of three donor-conceived adults born as a result of donor treatment in the late 1970s and early 1980s at the Royal Women's Hospital in Melbourne, recounts her experience of early donor treatment and having donor-conceived children.

The Victorian donor registers consist of the Central Register and the Voluntary Register. Both registers were managed by the Victorian Registry of Births, Deaths and Marriages. The Registrar provided VARTA with data for the period of 30 June 2016 from the donor registers for monitorin and public education purposes. A statistical snapshot of the numbers of people who have accessed the Central Register and Voluntary Register, as well as some information about their applications is provided for download.

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VARTA provides independent information and support for individuals, couples, and health professionals on fertility, infertility, assisted reproductive treatment (ART) and the best interests of children born.